You don’t need a background in epidemiology to get great information and story ideas from state and national cancer registries.
Those databases full of hospital/clinic-reported patient information and outcomes for cancer victims from the census tract to national level are valuable tools for researchers studying health trends, but also can be a trove of information for reporters. With about 1.3 million American adults and 12,000 children dying of cancer every year, it’s easy to see the value of these resources as reporting tools.
Each state and a number of organizations run registries. The National Cancer Institute runs a large registry, called SEER, that reporters can use to compare cancer trends across time, ethnicity, gender and ages. The Commission on Cancer, run by the American College of Surgeons, operates another good resource for national cancer statistics called the National Cancer Database. And while each state operates its own registry, the usefulness and usability will vary by state to state.
Registries are often merged with other information, such as claims data, to paint more detailed pictures of those with the disease. The New York State Department of Health for instance, has a merged data set combining the state’s cancer registry, Medicaid and Medicare claims data and SPARCS (patient level diagnoses, treatment and charges information). Researchers like Michael Hassett, medical director of the clinical information systems at the Dana Farber Cancer Institute, have used the data to study cancer trends across socioeconomic and ethnic lines.
Hassett did note that the timeliness in reporting data, lack of consistency across registry data points and lack of other clinical patient information are limitations to the registries.
But these databases aren’t only useful for researchers. Speaker Richard Clapp, the founding director of the Massachusetts Cancer Registry for the state’s Department of Public Health in 1980 and now professor emeritus at Boston University, pointed to registry data showing elevated levels of melanoma in Brookline, Mass. That data he said could inform the beginnings of a public health story for that community’s paper detailing the risks of skin cancers, especially among adolescents, and steps people could take to avoid the disease.
Clapp said that if you find something interesting while reviewing the cancer registry; call the state’s department of health. He joked that public affairs officers in some states might “run as fast as they could in the opposite direction,” when getting a call from a reporter. But, he added, if they’re anything like Massachusetts, they would provide you with the context and information you’d need to pursue your lead.
“They’ll explain it to you like you were a high school graduate with a little bit of a science background,” he said.
“And it depends on how much information you’re trying to get. Sometimes they won’t want to say anything, so you have to keep pushing.”
